Monday, June 23, 2008

NB: I wrote this on the train on Saturday, then found that Blogger doesn't work on mobile devices. Typical. It's really out-of-date now, but I will do a further update soon. Not immediately, as I am exhausted from a *really* complicated weekend...!

Ha. So my aim of posting nearly-daily has, um, not happened. To be fair, I lost my computer for a week due to a software problem. (It has now been returned to me relatively unscathed, thanks be to God and all Her angels. We all know what life as a disabled person without a computer is like. I don't wish to be reminded further.) I am currently attempting to post from my PDA - beautiful thing that it is, even though it turns itself off at inopportune moments and forgets to tell me about missed calls for hours - although this is going to be tricky bcause Blogger doesn't like mobile devices much. So here I am, trying to post from the train. My mother is ill and I am off to Dorset/Hampshire to look after her for half the weekend. (Don't point put the irony. I know.)

Things I have learnt over the past couple of weeks:

- You can shout about the Disability Equality Duty all you like, but if a public body chooses to break the DDA, you can't actually do much about it. Well, OK, you can get your long-suffering girlfriend, who is much better at being assertive than you, to ring and pretend to be you and demand reasonable adjustments, but it will be a massive effort. In the end, the company in question - the DVLA, who at first wouldn't let me answer their medical questionnaire in a typed format - got their information in brown and blue ink, because my printer cartridge had run out. That'll show 'em.

- Disabled people are the new mothers-in-law. It seems we are the last minority group it's still considered acceptable to make jokes about. I encountered twenty-six crip jokes at the 'Edinburgh and Beyond' stand-up preview show on Thursday night. Which is really rather a lot in a two-hour show. And made me wonder exactly why it's suddenly more acceptable than ever before for crip jokes to be made by non-crips, when white people wouldn't make jokes about black people, and even gay jokes are almost outlawed these days. Hmm. I had complex and meaningful thoughts about this, but I left them over on the Ouch messageboard. So I forget.

- Despite a) being very political, b) having been disabled most of my life (arguably all of it) and c) having done bits of disability rights campaigning since sometime a bit before forever, it seems I still have some massive hangups about physical impairment and mobility aids. Am in the middle of discussing it with Lovely CBT Woman (I can't bring myself to call her a therapist - it's just too American). I'm wondering whether part of the reason my doctors react so negatively to my wheelchair use is because I give out some kind of negative response to it myself, that they're picking up on. And I'm trying to work out how to deal with this - and with doctors generally - and with the whole area of having recently become visibly disabled. Politically speaking, it shouldn't bother me. Personally and honestly speaking, it does. That's not something I should be pretending about, just because the social model says my impairment 'shouldn't' be the focus of my life and philosophy (although actually that's an interpretation of the social model, possibly a wrong one). Playing 'I'm fine with this' when I'm not, always, is only going to make me crazy(er).

- London, while not the most accessible city in the world, is a shedload of fun if you like people-watching. All you need to do is go to Waterloo station and hang out. You'll see everyone from the gentry going to Ascot - you can spot them from entire platforms away, and they look like something straight out of the 1930s* - to adult identical twins dressed exactly the same, right down to shoes and backpacks. Seriously. Fun.

So, on those exciting and thought-provoking and otherwise truly inspired points, I leave you. Mainly because we've reached The Countryside, and shortly I won't have enough signal to post this even if Blogger does sort itself out and work out who I am. So. See you soon, the people.

Tuesday, June 03, 2008

Yes, I know. My blogging output, which was never all that regular, is particularly thin on the ground at the mo. Reasons include being off work *again* - which tends to signify the need to lie in bed and watch downloaded American television and listen to Radio 4 comedies for hours on end, as that's about all that I have either the physical or the intellectual capacity for - and physio, which would be driving me mental if I weren't already, and which is exhausting. Hence, again, all the telly. (How I Met Your Mother - the best sitcom you've never seen. If you're too ill to move for a while, download all three seasons and forget all your woes. Tonight's Doctor Who - one of the best things I've ever seen on the tellybox. The Ouch Podcast - what to listen to when you've run out of everything else.)

But as I am now so bored that my brain is dripping out of my skull via my ears*, it's time for Three Things, aka What I Write When It Has Been A While And/Or I Have No Imagination.

1. Physio: a good NHS experience (no, really)

While I've never much liked the whole concept of physiotherapy, and am still not sure whether it's going to do me any long-term good, I am nonetheless currently living at UCLH. And, weirdly, it isn't all that bad. It appears, so far, to be that elusive thing that I always suspected was a myth: a reasonably good hospital. Just comparing it to the faded yellow hellish halls of the Royal Free, where last year I suffered at the hands of some truly incompetent idiots who claimed to have physiotherapy qualifications, is interesting. There, the hydrotherapy pool was up (up!) twenty steps and no one was ever free to help me climb them; they stuffed up to eleven of us in a tiny pool together while a physio sat on the side reading a book and occasionally looking up to check we hadn't all drowned; a laminated chart of exercises was shoved in each patient's direction and we were told to get on with it; there were two inadequate changing rooms with no secure facilities for valuables; at the end of my six allocated hydro sessions I was basically refused any more physiotherapy on the grounds that "it doesn't work for fibromyalgia", via a very rude woman who phonedto tell me this (clearly no one could be bothered to give me an actual assessment in person).

And then I go to UCLH. I am having two types of physiotherapy there this summer - land physio and hydrotherapy. Beautiful new building with some lovely facilities. I arrive for my first hydro appointment and am shown around the hydrotherapy area by the department's dedicated receptionist, who shows me into one of the many large, comfy, accessible changing rooms and puts my locker key in a safe place. There is a physiotherapy support worker whose sole job seems to be to make sure that patients are OK. There are a few shallow steps down into the pool (it's like a miracle of engineering). I am introduced to the physiotherapist - it's just me and her in the pool (she apologises because next week there will be one or two others). Instead of just handing down a set of physio exercises from On High, we have an actual discussion about what hurts and what needs strengthening and so on. When some of the exercises sublux my joints, she revises the programme for me, and warns me against overdoing it. She suggests that I decide for myself whether I come weekly or fortnightly, in discussion with my primary physiotherapist. She refers to my overall programme as one of "long-term management" and says that she would like to give me exercises that I can take to my weekly swimming sessions (it's not entirely fact that I go swimming every week, but it is an aim) so that I can continue them when I'm not having regular hydrotherapy anymore.

Seriously. I didn't realise the NHS could work like this. What a shame I've never encountered it before, and probably never will again. My other physiotherapist isn't quite so great, but she's OK, and sensible, and happy to take things slowly with me. The jury remains out on whether it will help. It's some help to about 70% of EDS patients, but with very varied results, and it partly depends whether the physio knows what they're doing. I'm still working out whether mine does. We shall see.

2. The Girl

She is away. This is sad. She is back on Wednesday. This is good. I am living on ready meals. This is necessary. I am giving up the diet. This is important so that I do not entirely lose my mind. I will be curvy and happy and occasionally eat chocolate and not go mad with hunger. Hurrah.

3. Work

I don't have the first clue what to do about this. I've been off for four weeks. I have no energy and can barely get out of bed some days, and am in massive pain the other days. In reality, if I can't get in on Monday, it's time to call it quits. Everyone in the entire world has been telling me this, including my King-of-the-Protestant-Work-Ethic father (who offered to give me money if I was poor, and then said he would put it in a brown envelope if it affected my benefits - aww!) But I still need to persuade myself. Myself is not easily persuaded on these things. The only person who seems to think I should have a "good ending" (now there's psychobabble for you) at work is my CBT therapist. But CBT is another story for another time. And I have written quite enough for today.

Suffice it to say that I am bored, that I need a new project, and I will attempt to write about my attempts to find one. Shall we see if I can post nearly-daily for a while, again? I can't. But I will try. Aren't you all so lucky? I think so.